Prolonged Herceptin Use

[Darla]

Recurrance of BC 11/2000 with mets to the liver. NED after one year of Taxotere and Herceptin. I've been on Herceptin since and know I'm a lucky lady to still be NED. I'm trying to research whether to stop Herceptin or continue indefinitely. I know there is no conclusive data since the drug was just released in '98. But, what are your feelings or those of your Oncologists?

[Christine]

Darla,
Since you were stage IV, I suggest that you consider to continue to take Herceptin. Talk to you oncologist of course.

Here are three ladies from our site:

Ginger Empey, who also had liver mets, will celebrate her 10th year of continuous treatment in August. She was in the phase III trials with Dr. Slamon.

Phylicia Bowman, was the first patient to receive Herceptin in Washington DC after it was first approved by the FDA.

I have been on Herceptin since August of 1999.

All of our stories are on the "Stories" Page of this website:

Personal Stories (http://www.her2support.org/stories.html)

I believe all three of us are on the 3 week protocol, which takes about an hour or so every 3 weeks. None of us have any side effects.

Hugs and well wishes,
Christine

[al from canada]

Dear Darla,

We all know that BC Mets is a systemic disease and if Herceptin has held it off for (how many years??).

In short, "if it ain't broke, don't fix it"!! Stay on the herceptin!!!!!!!!!!

But, don't forget about those brain MRI's because herceptin doesn't touch those mets.

Great and keep it up as you are an inspiration to us all!

Al

[Phylicia]

Thanks Christine for mentioning me. I have been on Herceptin since October 12, 1998 and I continue to be NED.

Meanwhile, I just learned yesterday that, based on HLA molecular typing, I may qualify for the vaccine. I would like to talk with Kim of DC, who has recently started the vaccine. I will research further whether it makes sense for me to switch to the vaccine at some point.

I am considering switching to the vaccine because I have had problems with blood clots while being on Herceptin. I've been on the blood thinner, Coumadin, for several years. I'm also concerned that my mediport, which is 4 years old, may stop working and I may not have any other choice for implanting a new one. (I had to havbe angioplasty for my current one, which is in my arm, because I got a clot from the one in my chest. It already can sometimes take two hours before I get a blood draw, which is now required before I can get Herceptin or Zometa. I welcome the opinion of others on this.

Thanks,

Phylicia

[Darla]

Thanks AJ for your input. I've always felt the same as you . . . if it ain't broke, don't fix it . . . when it comes to stopping Herceptin. Guess I just need verification from a few people!

As far as a brain MRI, I've only had one and that was in 2001. Guess I should ask my Oncologist to order one just to check. How often do you have one?

[al from canada]

Darla,

Lisa or Christine or Steph could probably answer that question of "how often" better than I can. Try posting to them.

Take care,

Al